Our Vision & Mission

We are committed to making a difference for those families whose children have been diagnosed with Usher syndrome in Australia. Our Strategic Plan is guided by our three founding principles – Identify – Educate – Support

Identify

To ensure all those with Usher syndrome are known to our community to assist the collaboration of research efforts both here in Australia and globally.

Educate

Providing information to newly diagnosed families, as well as educating health care professionals, educators and support staff on the needs of our children to maximise inclusion and best clinical practice.

Support

Providing support to families, children, siblings, health care professionals, communities, sporting clubs, schools, service providers and all those who are part of the care and education of children with Usher syndrome to ensure they have the knowledge, resources and skills to ensure our children can thrive in their everyday endeavours.

Advancements in genetic and genomic testing make earlier diagnosis of rare genetic conditions such as Usher syndrome accessible to more and more children born with a hearing loss in Australia. This earlier diagnosis leaves a distinct gap in the provision of services and support for families, as well as an evidence-based clinical pathway for clinicians to guide their care for children with Usher syndrome in Australia.

As well as providing direct support to children with Usher syndrome and their families, UsherKids Australia works to create a conduit for clinicians, researchers, service providers, educators and the general public to come together in the care for children with Usher syndrome.

Our Vision

Enhancing the lives of children with Usher syndrome in Australia through information, collaboration and connection.

Our Mission

We work to ensure children diagnosed with Usher syndrome and their families have access to an informed, committed and caring community of clinicians, service providers, educators, researchers and peer support networks to allow them to thrive in their everyday endeavours.

Our Aim

Advocate for equitable access to genetic testing for those diagnosed with a hearing loss via Newborn Hearing Screening nationally

Identifying current limitations in the clinical practice and service provision of individuals and organisations that specialise in the care of hearing or vision impaired Australians and work collaboratively with them to improve the care of children with Usher syndrome nationally in various settings

Dissemination of Australian and International research efforts related to the treatment, care and/or support of those living with Usher syndrome or related conditions such as retinitis pigmentosa and hearing loss via our website, conference participation, articles and newsletters, including research on specific therapies to slow down or halt the onset of various biological symptoms of Usher syndrome, as well as research into the psychosocial aspects of living with a rare disease such as Usher syndrome.

Creating consistent high quality information and resources about Usher syndrome to be used by clinicians, educators, service providers and families via our website, conference participation, articles and newsletters.

Providing email or phone support to newly diagnosed families as well as connecting families with support services, clinicians and other families in similar geographical location

Biennial UsherKids Family Day and UsherKids Connections Conference to coincide with global celebration of Usher Syndrome Awareness Day

Continue our collaboration with University of Melbourne Masters of Genetic Counselling Course Placement Program